Closing the gap: improving care for patients with wAIHA
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Warm autoimmune hemolytic anemia (wAIHA) is a rare and complex autoimmune disorder that presents unique challenges for both patients and their healthcare providers. Dr Sandhya Panch, medical director of transfusion at Fred Hutch Cancer Center, who oversees wAIHA patients in the Pacific North-West, USA has witnessed firsthand the gaps that can exist between those living with wAIHA and the medical professionals tasked with managing their care. By shedding light on this disconnect and outlining strategies to address it, we can work towards ensuring all wAIHA patients receive the comprehensive, personalised treatment they deserve
Written by Nicola Miller
Interview with Dr Sandhya Panch, medical director of transfusion, Fred Hutch Cancer Center, and associate professor, Division of Haematology and Oncology, University of Washington School of Medicine
One of the key factors contributing to the patient-provider gap in wAIHA is the inherent heterogeneity (diversity) of the disease. As Dr Sandhya Panch explains, “Autoimmune conditions in general, and wAIHA specifically, can present with a wide range of severity and treatment responses.” Some patients may have compensated hemolysis1 requiring no intervention, while others struggle to achieve remission despite trying multiple therapies. This variability makes wAIHA challenging to manage, as there is no one-size-fits-all approach. “I have patients who receive a round of steroids or Rituximab (immunotherapy), and they go into remission with no recurrence,” says Sandhya “And then I have others who are on numerous medications and we’re still trying to get a handle on the condition.”
Unravelling the reasons behind these disparate outcomes is an active area of research for Sandhya, who maintains a biorepository and registry to study patient samples. “We’re trying to understand why some patients respond better to certain treatments than others,” she explains. “There’s still so much we don’t know about the underlying mechanisms and the drivers of this disease.”
Adding to the complexity is the fact that wAIHA can present as either a primary autoimmune disorder where the cause is unknown, or secondary to an underlying condition such as lymphoproliferative disorders or rheumatologic disease (for example systemic lupus erythematosus). This distinction is crucial, as the treatment approach differs significantly. “If a patient has lymphoma, the priority is to treat the lymphoma first, with the thought that the autoimmune haemolytic anaemia may then resolve,” Sandhya explains. “So those patients often end up being seen by the oncologists initially rather than coming to me as a haematologist.” This can mean that important opportunities may be missed for researchers like Sandhya, who are trying to build on their understanding of the different kinds of wAIHA. “From a clinical standpoint, it’s important to do a complete workup to ensure you’ve identified any underlying drivers before pursuing treatments that would typically be advised for wAIHA’,” she explains. “Otherwise, you may be missing key pieces of the puzzle.” Not all providers take this thorough approach.
“I’ve certainly had patients referred to me who were diagnosed with “primary wAIHA”, but after I did additional testing, we found an underlying lymphoproliferative disorder2 or rheumatologic condition. So, I think there’s a real need to educate the broader medical community on the importance of a comprehensive evaluation for these patients.”
This lack of awareness extends beyond just identifying the root cause of wAIHA. Despite wAIHA being covered in medical school and haematology training, Sandhya has observed significant gaps in general knowledge about the condition, even among specialist providers. Many HCPs still have an outdated understanding of wAIHA, focusing solely on traditional treatments like steroids and splenectomy, rather than evaluating newer immunomodulatory therapies. This lack of awareness means that patients often cycle through less effective treatments for years before being referred to an expert like Sandhya and her colleagues.
“I’ve had patients who have been on steroids for years and had their spleen removed, and it still hasn’t worked,” she explains. “By the time they get to me, we’ve missed critical windows for potentially getting them into remission with different therapies or by being evaluated for clinical trials.”
Sandhya believes that she and her colleague have a responsibility to help close the knowledge gap by being part of the solution of knowledge sharing among their professional peers, but she also believes that a multi-faceted approach is required to close the knowledge gap between patients and their treating physicians.
Integrated continued medical education
By ensuring wAIHA remains a focus of ongoing professional development, HCPs can stay up to date on the latest diagnostic approaches, treatment options, and management strategies. wAIHA should be integrated into ongoing medical education programmes, such as:
- continuing medical education (CME) courses for practicing haematologists and internists
- specialised training modules for haematology fellows and residents
- grand rounds and case discussions at academic medical centres
Promote interdisciplinary collaboration
Given the potential for wAIHA to be secondary to underlying conditions like lymphoma or rheumatologic disorders, interdisciplinary collaboration is essential. HCPs should be trained on the importance of comprehensive workups and when to refer patients to specialists, such as oncologists or rheumatologists. Regular case conferences and joint clinics between haematologists, oncologists, and rheumatologists could facilitate this cross-pollination of knowledge and ensure patients receive coordinated, holistic care.
Leverage valuable patient advocacy resources
By tapping into the expertise and insights of patient advocates, HCPs can enhance their understanding of wAIHA and improve their ability to provide truly patient-centred care.
Organisations like the wAIHA Warriors have been instrumental in bridging the gap between patients and providers. HCPs should be encouraged to engage with these patient advocacy groups to:
- learn about the patient experience and unmet needs
- understand the latest developments in patient education and support
- collaborate on educational initiatives to upskill the broader medical community
Promote research participation
Encouraging HCPs to refer patients to clinical trials and research studies is crucial for advancing understanding of wAIHA. However, as Sandhya notes, some patients may be hesitant to participate due to a lack of trust or fear of the medical system. HCPs should be trained on strategies to build strong, authentic relationships with patients and foster an environment of trust and transparency. This can help overcome barriers to research participation and accelerate the development of new diagnostic tools and treatments.
By implementing these multifaceted approaches to provider education and training, we can work towards closing the knowledge gap around wAIHA and ensuring all patients have access to the highest quality, most personalised care.
Sandhya notes that the role of advocacy groups in closing the gaps between HCPs and patients is pivotal, and she believes that patient advocacy groups like the wAIHA Warriors have been instrumental in helping HCPs better understand the lived experience of the disease. By sharing their stories, challenges, and perspectives, patients have shed light on issues that may have previously been overlooked or underappreciated by the medical community. For example, Sandhya notes that the wAIHA Warriors have been “instrumental in raising awareness about issues like fatigue, which we now recognise can be a major problem in autoimmune disorders regardless of the degree of anemia.” Without this patient-driven insight, HCPs may have continued to solely focus on managing the anemia, rather than addressing the debilitating fatigue that can significantly impact quality of life.
Patient insights can also help shape more personalised, patient-centred treatment approaches. By understanding the unique priorities, concerns, and preferences of each individual, HCPs can work collaboratively with patients to develop care plans that align with their goals and values.
“I spend at least half an hour for follow-up visits, because it’s so important to let the patients talk and provide options, and then involve them in shared decision-making,” explains Sandhya. “Whereas in other settings, the focus is often just on ‘this is what you have, here’s your medication, now get out.’ Incorporating patient perspectives into the treatment decision-making process can lead to greater treatment adherence, satisfaction, and ultimately, better outcomes.”
Patient advocacy groups don’t just educate HCPs—they also play a crucial role in driving research and innovation. By sharing their experiences and unmet needs, patients can help identify critical areas for further study and development. This type of patient-centred research, informed by real-world insights, can accelerate the discovery of new diagnostic tools and therapies.
Perhaps most importantly, integrating patient insights into clinical care can help foster stronger, more trusting relationships between individuals and their providers. By demonstrating a genuine interest in the patient’s perspective and a willingness to collaborate, providers can build the foundation for a true partnership in managing this complex condition. Sandhya believes that the future of this lays in creating hubs of expertise.
“I think that having Centres for Excellence or having particular physician groups and nonprofits talking to each other will help not only themselves in their learning but potentially the wider scientific and patient community. By embracing patient insights and expertise, the healthcare system can work towards a more holistic, personalised, and collaborative approach to caring for individuals with wAIHA, which should be our goal.”
In pursuit of these all-important stronger patient-provider relationships, wAIHA Warriors have initiated a “Gold Star” HCP database programme. This platform allows patients to review HCPs and aims to help connect patients with providers who have demonstrated a deep understanding of the condition and a commitment to providing high-quality, patient-centred care.
As Sandhya explains, “In the United States, there is a notable lack of designated Centres of Excellence for rare autoimmune conditions like wAIHA. This can make it challenging for patients to identify HCPs with the necessary expertise, especially in more geographically dispersed areas. The “gold star” database serves as a grassroots solution to this problem.”
By allowing patients to provide direct feedback on their HCPs, the “gold star” initiative fosters a sense of trust and transparency that is often lacking in the traditional healthcare system. Beyond just connecting patients with knowledgeable HCPs, the “gold star” database also serves as a tool for driving continuous improvement within the medical community. Providers who receive positive reviews can use that feedback to further enhance their skills and knowledge, while those who receive lower ratings can identify areas for growth and development. Over time, this feedback loop can help raise the overall standard of care, ensuring that no matter where a patient resides, they can access the high-quality, personalised treatment they deserve. As the wAIHA community continues to navigate the complexities of this rare condition, initiatives like the “gold star” HCP database will play a vital role in closing the gap between patients and their healthcare providers, fostering stronger partnerships, and ultimately, improving outcomes.
The journey to optimal care for individuals living with warm autoimmune hemolytic anemia is paved with challenges, but also opportunities. By acknowledging the gaps that exist between patients and their healthcare providers, and taking proactive steps to address them, the community are working towards a future where wAIHA is better understood, more effectively managed, and where every patient feels heard, empowered, and supported.
At the heart of this effort must undoubtably be a renewed commitment to education—not just for patients, but for the broader medical community as well. But the onus cannot fall solely on the shoulders of healthcare professionals. Patients, too, must be empowered to take an active role in their own care journeys. By participating in clinical trials and research studies, sharing their experiences, and forging strong partnerships with their providers, individuals can help drive the innovation and understanding that is vitally needed.
To learn more about the Gold Star Haematologist programme please visit here: https://waihawarriors.org/hematologist-directory
wAIHA Warriors
https://www.fredhutch.org/en/provider-directory/sandhya-panch.html
Definitions
- compensated hemolysis: Situation where red cells are being destroyed by autoantibodies, but the body is able to increase red blood cell production to keep up with accelerated destruction.
- lymphoproliferative disorder: Lymphoproliferative disorders comprise a group of several conditions, in which lymphocytes (a type of white blood cell) are produced in excessive quantities. These disorders primarily present in patients who have a compromised immune system.
Articles within this digital spotlight are for information only and do not form the basis of medical advice. Individuals should always seek the guidance of their medical team before making changes to their treatment.
This digital spotlight has been made possible with financial support from Johnson & Johnson. The content was developed in collaboration with wAIHA Warriors. All opinions are those of the contributor. RARE Revolution Magazine retains all copyright.
CP-485655 | November 2024
